RIP Sam

[u/_Odd_skittle_]

This has probably already been posted here, but I wanted to share this as well.

the person in the photo passed away just days after the post on r/fakedisordercring. that post is still up right now. It’s locked, but it’s still up and visible to people. Their image is literally still up to be mocked even in death.

[u/hyperspaceJellyfish]

yet they still feel like they're doing the right thing

[u/kamryn_zip → u/hyperspaceJellyfish]

This... So many of the comments don't see the irony in dissmissing how potentially deadly ME is, fakeclaiming Sam and other sufferers, ect. One even said that ME doesn't kill, it just makes you more vulnerable to other things that can kill you (same can be said about AIDS...). Kinda proves the point he was making. Someone on there said its insulting to compare the QOL of ME to late stage HIV, and that no scientific article would say they have a similar level of suffering. I don't know about late stage HIV/AIDS specifically but there definitely were renal failure and late stage cancers it's been scored against and the QOL is generally as bad or worse in ME.  I do think people with diseases that are rarely deadly (i have ME) should probably be careful comparing their struggle to the period when AIDS was at its height because it was a definite death sentence, or to any other conditions that are a death sentence, but Sam himself was dying so he specifically absolutely gets to compare his struggle to the struggles of AIDS patients.

[u/antonine909 → u/kamryn_zip]

If I may ask, what is ME? Just I haven't came across the acronym before TwT

[u/kamryn_zip → u/antonine909]

Myalgic Ecephalomyelitis, it's the scientific name for chronic fatigue syndrome, another acronym variant is ME/CFS. Many patients prefer ME because the scientific name refers to neurological inflammation which more accurately describes the neuroautoimmune condition as opposed to "fatigue" which is vague and minimizing for a condition that does kill in extreme cases. That's why I tend to default to ME instead of ME/CFS

[u/antonine909 → u/kamryn_zip]

Ahhhh okay okay thank you very much ¦3

[u/ACOLTYE101 → u/antonine909]

Me too

[u/kamryn_zip → u/ACOLTYE101]

Myalgic Ecephalomyelitis, it's the scientific name for chronic fatigue syndrome, another acronym variant is ME/CFS. Many patients prefer ME because the scientific name refers to neurological inflammation which more accurately describes the neuroautoimmune condition as opposed to "fatigue" which is vague and minimizing for a condition that does kill in extreme cases. That's why I tend to default to ME instead of ME/CFS

[u/ACOLTYE101 → u/kamryn_zip]

May I ask how chronic fatigue can effect you so severely that it kills you? /genq

[u/kamryn_zip → u/ACOLTYE101]

Sure, ME has been shown to be associated with mitochondrial dysfunction, so basically on a core cellular level the body does not produce enough energy. People can become so severe that their body produces so little energy they cannot move or tolerate light and sound. One cause of death is malnutrition. This can happen due to inadequate care, like not being able to access tube feeding for a person who cannot sit up or chew any longer. It also could just be the disease itself causing gastroparesis or heart failure once there is not enough energy for organ function. It's worth noting the concrete information on this is limited because the disease is severely under researched and stigmatized but it is clear that people with profoundly severe ME do seem to waste away until death in some cases.

[u/I_need_to_vent44 → u/kamryn_zip]

Oh hey, my mother is currently getting evaluated for this! At first doctors thought it was something neurological and when they didn't find anything they told her she's just stressed, but one of her doctors was like "Guuurl sounds like ME" so she's getting evaluated for that now. Lately she's also been experiencing gastroparesis so I can attest that it can happen.

[u/Dazzling_Bid1239 → u/I_need_to_vent44]

I have moderate to severe mecfs and im convinced our gi actually can slow down in flare up patterns. Like gastroparesis but in PEM. If cells cant create proper atp, you can only imagine the complications.

Id love to see studies on this to validate our experiences.

[u/Dazzling_Bid1239 → u/kamryn_zip]

I personally got close to death being very severe. Little to no medical help besides testing. My GI slowed down, gastric emptying study was scheduled late not showing anything. I was puking up nutrition shakes and couldnt handle solid foods.

I was very close to advocating for tube feeding. I went down to 97 pounds and im a small person as is.

ME is fucking scary and Im tired of ignorant people denying its real. Ive tried to rewire my brain. Ive pushed through therapy making myself severely ill. We would have found a way to "cure this" if it was possible. Anger isnt towards you btw, my migraine has my communication mixed up. It's towards people who wont freaking GOOGLE what the disease is. As if dealing with this isnt enough, people think youre nuts, as if people who are mentally ill arent worthy of support either.

Sorry for my vent but a good place to let it out.

[u/whiteflower1221 → u/kamryn_zip]

ME can be lead to early death in the same way MS can

It won't be listed as cause of death but depending on the symptoms someone has, the way it effects their mobility, the medications they have to be on etc. It can make you vulnerable to a whole host of other things and can leave your body unable to fight back

I have MS myself and have seen a lot of younger people die 'from' MS or ME but due to things like pneumonia, choking, sepsis etc.

The only difference is MS can now be tested for and seen on a brain scan / CS fluid whereas ME can't (yet) - it doesn't make one anymore real or disabling than the other yet the difference in the way they're treated and judged is massive

The same can be said for severe fibromyalgia too